Friday, April 24, 2009

Moving on...



Yesterday Tommy started the phase that I have been anticipating since we started this whole thing..."Delayed Intensification". This is the phase that is supposed to be the hardest of the whole thing, we will see. We went to clinic yesterday and when we walked in they said they needed to do an ECG (echocardiogram-an ultrasound of his heart), I about died. So we went down and looked at his heart, and everything looks great, thank goodness! This new chemo called Doxorubicin he started yesteday has a major side effect, it can cause damage to the left ventricle of the heart-that's comforting. It just keeps getting better and better. So I guess through this phase and for the remaining 2 1/2 years of his treatment, and then each year after they will continue to do the ECG to monitor his heart closely. Tommy thought that was really cool to see his own heart. I'm so grateful they are aware of these things, and they are on top of it, GREAT DOCTORS!!
We went back upstairs and started the clinic process, getting weighed, Tommy is losing a little weight, measuring him, he is getting taller however FINALLY! They take his blood pressure, temperature, and we wait some more. This clinic up at Primary's is fantastic, however it is just like a doctors office, a lot of waiting. I am a little frustrated this week only because what usually takes us about 3 hours MAX took us today 5 1/2 hours. The nurses up there are the best! I haven't had a complaint about one of them until today, and she was SLOW. Bless her heart, very nice, but must have thought we had nothing better to do with our day. My poor neighbor had my kids all day, thank you Alisa, you are a life saver!!
Thank you again Kirsten Zundel and your cute girls for the "chemo days" toys or we would have been nuts. Tommy sat there and played with the "Flarp" goo for hours, laughing and blaming everyone that was in the room for "tooting". Tommy had all the nurses and Dr. Barnette laughing, that is why he loves this place so much. He loves the attention, and everyone up there loves Tommy, how could you not? He is always surprising Dr. Barnette. He walked in today and shot a plane at him from his plane-gun. Barnette is so great, he and Tommy are buds.
Dr. Barnette gave us a rundown of what to expect from this phase for the next 2 months. He started him on steroids again, we are really looking forward to the "roid-rage" returning and the constant eating too. Luckily he is only on them for 2 weeks, so hopefully he won't balloon like he did last time. He also has to take a whole bunch of new drugs that all have fun side effects as well. He also has an ear-infection so he is on 2 antibiotics. POOR KID! He gets so sick of taking medicine.
Tommy had another back-poke yesterday to keep the leukemia out of his spine and central nervous system. He will continue to get those once a month throughout the whole treatment. We are always so grateful when the test comes back negative. He gets them now in the upstairs "sedation suite", so Tom and I get to watch the procedure. It is interesting how they do it. They give Tommy these drugs that make him really loopy, it's funny! He is awake, but just really out of it. He looks at us and so enthusiastically says "Wow you have 4 eyes" or "You have 3 heads, and 2 noses." It's really hard not to laugh. We ask him about his girlfriends and who he kisses, it's the only time to get it out of him. I need this drug when he's a teenager! Then we have to stay in the room until he recovers, which usually takes about an hour.
Then off to the "Infusion Suite", I love how they make it sound so inviting, it's really just where the kids get blood and chemo. So they gave him his new chemo, the doxorubicin which is a red chemo. As it was going in, I thought it was blood so I ran to go get a nurse they warned me it was the chemo and not his blood. Thank goodness! So far our day at the clinic has been very out of the ordinary. After the doxorubicin they gave him his usually vincristine chemo push and we were on our way home, finally!
Tommy is my HERO! I love that little boy with all of my heart. We have grown so much closer through this whole experience so far, and our family as well. It has definitely been a blessing in disguise. I know it sounds so crazy to think of cancer as a blessing. We have some friends who have a little boy who is going through this as well, they told us the same thing when Tommy was first diagnosed and I thought they were crazy. As much as I hate it, there are so many things it lets you realize about the people you love and about life. I have learned a much greater appreciation for my kids and my loved ones. Life is so fragile, love your loved ones!! I don't know why Tommy was chosen to have to endure this, but I truly believe it was to make us stronger, and make our families closer, and I continue to pray that it does. Thank you Tommy for being the one who was strong enough to endure this trial, you amaze me everyday little boy. Tommy was born my toughest, and I am now constantly grateful that he was. I hope you remember some of this when you get older. I know this trial will make you even tougher (which is hard to imagine), and I hope that it teaches you empathy, patience and determination. I hope you learn that nothing can stop you, especially not cancer! We love you Tommy and pray for you continually. I know the next couple months will be tough, but keep that "Eye of the Tiger" and you will get throught this just fine.
We thank you all for your continued support and your prayers.


Tommy's new daily regimen...Looks fun huh?

3 comments:

  1. What a beautiful post. It's hard to imagine that such a little person would have to endure such a trial...he WILL be stronger and so will your family! We still pray for you every day. Keep on keepin' on!!!! We love you Tommy.

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  2. I know you will want to kick me when I say this, but you will be surprised at how fast this phase goes by! I won't lie... it is the worst one, but only because of the mouth sores. And there is a chance he may not get them! Hang in there! You are almost to maintenance and everything really is very manageable once you get to that point! You guys are awesome--we think of you often and pray that you will continue to do so well!
    Jeff and Heidi

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  3. Heidi you are such a great Mom! No wonder Tommy has so much strength and fight in him! Your blog is always so informative and uplifting. It's amazing to see what you can handle as a family when you have eachother and faith in the Lord. We will continue to pray for your family and Tommy!

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